Tag Archives: regret

There were few things that led us more astray than the idea of autism being a developmental delay. Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan. (This post is not about Stanley Greenspan or his method. His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal. The private hell of regret is a cruel place to linger. Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.” In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell. Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood. Because people assumed she spoke what she intended and meant, she was penalized for the words she managed to utter. “Do you want to go fast or slow?” “Do you want to stop or go?” “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions. We assume she has no interest in engaging. We assume she doesn’t want to spend time with us. We assume she is “in her own world.” We make assumptions and we behave according to those mistaken beliefs. We believed each word was a milestone, paving the way for more language acquisition. We believed it made sense. Lay the foundation, create a strong base of words for more to follow… Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed. This idea of a developmental delay bled into every single aspect of her being. It was believed that her speech was delayed, as were her fine and gross motor skills. Therapies were structured around this concept. All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six? At the time we didn’t question any of this. Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know. We listened to the many professionals we consulted. Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter. It never once occurred to me that maybe, just maybe what she said was not what she intended to say. It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider. We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma. Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing. Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004. The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between. It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else. One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal). It meant pursuing all kinds of therapies that never questioned the push for spoken language. It meant not considering AAC devices, because she “had language.” It meant encouraging my daughter to “use your words.” It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught. It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot. Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it. My daughter amazes me every, single day. As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Five years ago I was in a bad, bad place. Life felt unbearable. The future loomed ahead shrouded in fear. I could not imagine a life that was not bleak and filled with pain. There were times when I could not bear the thought of another day. There were times when I felt it was all too much. People would make kind suggestions, but none of their words made sense to me. I was sinking and saw no light. I thought it was because of my specific circumstances. I thought it was because I was the parent of a child who, I was told, couldn’t and didn’t understand most of what was said to her. I was told she couldn’t comprehend this world. I was told concepts like less and more, time, currency were beyond her ability to grasp. I was told she was in her own world. Despite all the years of therapy, there was no hope of her being mainstreamed, she did not make the sorts of leaps forward that other people’s children had.

I blamed myself, I blamed my husband, I blamed the environment, I blamed my father, I blamed… There were so many things to blame, but all it did was leave me bereft, empty, and in the middle of the night I would lie awake and cry. I cried for myself, but I also cried for my child. I loved my child. I ached for my child and what seemed to be her inevitable future. Along with the ache for what might have been, but was not, was the sad, dark, bleak despair that seeped into every aspect of my being. I had fantasies of “heading north”. I would smile weakly at my husband and joke, as I gathered my wallet and keys for a quick trip to buy milk at the grocery store, “I may not be back.” Richard would grin and maybe we would even chuckle, but there was a part of me that wasn’t laughing. There was a part of me that meant it. I wanted to leave all that pain behind me.

There are those reading this who will cringe at this description. There are those who will judge me and what I once felt. There are those who will point out how self involved all of this sounds. They will say, but how could you not see that what you were feeling was affecting your child? There are parents who have children just like mine who never felt what I’ve described, who will not be able to understand or relate, who will read my words and shake their heads in horror. I understand those responses too, because now, I catch myself feeling those feelings too.

My daughter has defied everyone’s expectations, including ours. She is writing now.

She is writing such incredible words. Sometimes a sentence may take her five minutes to construct. I would cheerfully sit for thirty minutes or however long it takes for her to express herself. Parents hear about my daughter and they say, “Ah, but my child isn’t like that.” And so I ask, “How do you know?” Parents say, “I know my kid. He/she isn’t able to understand.” I once believed that too. And so again I ask, “How do you know?” Parents say, “I know my child better than anyone.” I once said this as well. I thought I knew. I believed what others told me. She would laugh and then run full force into a cement wall, using her head as a batting ram. We would get the dreaded phone calls from her school. All those doctors, therapists and teachers, all those IEPs where she was described as unable, incapable – “Emma is unable to decipher simple text.” “She does not know the value of a penny.” “We will continue to work on sight words.”

Today my daughter is enlightening me. If you want to know more, read “How We Got Here“. Just the other day Emma wrote, in response to an incident at school, “You must remember how stressful it is not being able to tell anyone my silent screams of disconnection.” Her school is now trying to learn RPM so that she can write with them too.

I cried when she wrote that. I cried because I didn’t know until recently. I cried for all the years when she had no way of telling us. I cried for all the times I didn’t believe. I cried for all the children who are just like her, right now, who cannot tell anyone about their silent screams. I cried for every single parent who has ever felt the way I once did. I cried for every single child of those parents and for all the times I heard about a child who was writing to communicate, just as my daughter is now, and how I didn’t believe she would be one of them. I cried for all the times I heard about an Autistic child or adult and consoled myself by saying, “they are an anomaly.” I didn’t dare hope that one day my daughter might be writing the things she now writes. I didn’t dare hope, it hurt too much.

To the parents who feel overwhelmed with fear and despair – I was once just like you. Had I found a secret online group of parents feeling and talking the way I once did, I would have joined in an instant. I’m grateful now that I didn’t find such a group because there’s another way. I found another way, but not before making many, many more mistakes. This blog documents a number of the mistakes I’ve made over the years, but not all of them.

If there’s one thing I want to say, it’s please, dare to hope. Without that we are all lost.

Last night Richard and I had one of our conversations. It’s the conversation that starts with, “If only we’d known what we know now…” The conversation that continues with, “If only we’d known our friends, particularly the ones whose neurology we don’t share, the ones who are Autistic…” It’s the conversation that ends with both of us looking at each other and shaking our heads until one of us says, “We would have done everything differently…” And then the other joins in with, “Literally. We would have literally done everything differently!”

One of the biggest motivators I have for continuing to blog about autism is this idea that everything would have changed had we known what we know now. How different our lives would have been had our introduction to autism not been abject fear, but to adults who are Autistic. How different our approach would have been had we not reacted to the news of our daughter’s neurology with terror. How much money, time, energy, not to mention pain would have been avoided had we not listened to all those non-autistic people who greeted our daughter’s diagnosis with, “Here’s what you need to do…” “Here’s the name of a therapist/neurologist/homeopath/nutritionist/DAN doctor, call them now!” “You should try…”

I’ve written about all of this before, but since I typically blog Monday through Friday, many of you may have missed those posts, so here are just a few…

What we were told about autism was WRONG. Everything we were told during those first few years after Emma was diagnosed have NOT proven to be true. Having an Autistic child does not mean the entire family will be dragged down. No one need “sacrifice” their life to support another, in fact, our lives are enhanced by each member of our family. Each of us brings something unique and special to the family. Having an Autistic child is not the same as having a child diagnosed with cancer, this comparison is incredibly hurtful to my child, to your child, it is offensive to all of us.

We have been told all kinds of things about our daughter by non autistic people. Not one of their predictions has come true. NOT ONE! Read that again. Nothing we were told would happen, actually has! Think about that. Being given an autism diagnosis for your child is like listening to an anchorman predict the weather a year from now. But we believed every single one of those pronouncements and then behaved as though each dire prediction was fact. If I’d known all the people I know now, the people I’ve interviewed, whose blogs I read, all the people I am fortunate enough to call my friends, who have changed my life and helped me understand autism and what it’s like living in a world that doesn’t accept them, growing up with parents who believed they were doing what was best for them, but who were being told the same sorts of things we were told… Had I known all those people when Emma was first diagnosed, our response to the pronouncements and predictions given to us would have been to laugh and walk away. Literally. We would have laughed and walked away.

We would not have hired the agency who provided us with round the clock therapists. We would not have shuttled Emma from one doctor to the next. We would not have spent all those nights lying awake, staring at the ceiling fearing what would never come to pass. We would not have lost all those years, years we could have spent actually enjoying and loving our child, but that were spent in fear, engaged in a war on her neurology. All those years when Richard and I felt beaten down, could have been spent embracing this amazing being who has taught us so much. The challenges any parent faces, exhaustion, sleepless nights, worry, these would certainly have been a part of our story, but the terror… the terror did not have to be a part of it.

So here’s the truth about my Autistic child:

She is a human being with desires, wants, needs, emotions and feelings, just like any other child. If I treat my (Autistic) child the way I would want to be treated, with unconditional love, respect, encouragement and support, I will have been a good parent. If I can be kind, patient, vulnerable and willing to examine my preconceived beliefs about what it is to be a human being, while making amends for my mistakes; I will have led a good life.